Famous Dementia Doers Who Made A Difference

Recently, when I set out to do a blog on famous PWD (persons with dementia), I was disappointed by the number of people diagnosed with dementia related disease (such as Alzheimer’s) that didn’t speak out. How sad.

In my research of over 200 “famous people” PWD, I found exactly 5 who did something to make a difference. The others kept their diagnosis hidden until after their death or care facility placement, when the family announced they had been suffering for years.

These five promoted dementia awareness, fought for legislative changes, wrote a book or song and/or became an Alzheimer’s Advocate.

3- Rita Hayworth – EOAD first noticeable at age 46. When she died, at age 68, President Ronald Regan included in his statement: “Rita became known for her struggle with Alzheimer’s disease. Her courage and candor, and that of her family, were a great public service in bringing worldwide attention to a disease which we all hope will soon be cured.”

4- Glenn Campbell – After being diagnosed with Alzheimer’s in 2011 he went on to complete his “Goodbye Tour” with three of his children.

5-Patricia “Pat” Summit – The book she wrote, “Sum it Up”, covers her life including her experience being diagnosed and living with Alzheimer’s. She is currently an advocate for people with Alzheimer’s Disease.

During the last 18 months, I have met the most remarkable PWDs who are using their precious cognitive time to make a difference. These “Dementia Doers” continue to: promote dementia awareness, fight for legislative changes, write books, blogs or websites, and/or act as mentors to other PWD.

I want to say Thank You to MY list of famous PWD, including: Robert Bowles, Harry Urban, Norms McNamara, David Kramer, Chris Roberts, Paulan Gordon, Susan Suchan, Karen Francis, Rick Phelps, Truthful Kindness, and Jennifer Bute. Like Rita Hayworth and Pat Summit, most of these people were diagnosed before age 58.

Thank you for letting the world know our brains may be dyeing, but we’re still having some fun and trying to DO SOMETHING to help others and make a difference. Ronald Regan said: “At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done… I now begin the journey that will lead me into the sunset of my life.”

Post navigation

9 thoughts on “Famous Dementia Doers Who Made A Difference”

Great article. One thing to consider is that many people with dementia lost insight as a matter of their disease process. They truly do not see the mistakes they make and argue up and down how they are fine (when their is evidence that they are not). So for those people, they would not be able to advocate and educate. But I think that points out even more about how important the works of Rick, Norms, Harry, etc. and the articles you do are so important!

Thank you for your comment. I agree not everyone is able to comprehend what is happening to them, but many are afraid/ashamed to talk about it. Not wanting to or not knowing how to tell friends and family is a common reaction in chat groups. It’s hard and yes, people treat you different. It does make me sad that over 200 public figures or their familes didn’t use their voice to help others.

Laurie, Thank you for your kind words. Most importantly, you are helping to create a better awareness of dementia and the impact it has on those living with dementia and their care partners. As we all work together, our country and world will become more dementia friendly. Thanks for being my friend. You are a very special and dear friend to me.

Your kind words are appreciated. In the beginning we thought it was just us alone fighting this disease, now we know there are lots of us out there all trying to do our bit to make the world a more Dementia Friendly place and aware. Thank you again. Terri and Bob Burton

Laurie thank you for this post. It is thought provoking. I will share it to the YoungOnsetDementiaSupportGroup page on Facebook to share your article further. The threads of feedback are also thought provoking. Thank you.

Laurie, I never saw this post when you wrote it. Thanks for including me. I’m honored. 90% of my advocacy is now in my local community and with the Alzheimers Support Network in Naples, FL. I sit on the Board of Directors of the non-profit, advise as an active volunteer, and lead some group meetings. Best to you!